To take Hydrea or not

[Splb3317]

I have recently been diagnosed with PRV and have had 1 venesection in the past 4 months. I met my new consultant yesterday, who was about to give me a prescription for Hydrea, which he says is the first line of attack for PV sufferers of my age (I'm 69). Apparently, older people have a higher risk of stroke, DVT etc. I am concerned about side effects, in particular leg ulcers and have asked for 3 more venesections , to see what results they bring, before I decide. Could anyone tell me what side-effects they have had from this medication? It does seem to be effective for older sufferers, but...........

[mol56]

I've been on this drug for over 9 years.

I have E.T. I am 65.

I have not had any leg ulcer problems, maybe a little hair thinning but not put on any significant weight. The drug does suppress blood cells - white, red and platelets and affects my haemoglobin levels.

I have had a small basal cell carcinoma removed from the bridge of my nose but this could have happened any way as I had an outside job for many years and used to cycle to work.

The medication seems to be the best one for me at the moment but we are all so different and what suits one person may not suit another.

[Splb3317 in reply to mol56]

Thank you so much for that. This whole PC thing seems to be a delicate balancing act. It does seem to be the drug of choice of the medics, so I may have to bite the bullet in the end. Thank you again.

[piggie50]

Hi,

I was diagnosed with PV 9 years ago and I have been taking hydroxy for 2 years. I'm 61 now. I take 500mg 6 days per week. I have no side effects, hair falls out a bit when washing it, but that happened before, yes I get tired sometimes but I got tired before I started taking the drug. I couldn't say what it would be like if I was on a higher dose, maybe more side effects? As I've said before, on this forum the thought of having a stroke scares me much more than taking the hydroxy.

Don't be afraid of trying it. Many many people on this site tolerate it very well.

Good luck

Judy x

[Splb3317 in reply to piggie50]

Thank you Judy. That is very encouraging. I'm beginning to see the advantages of taking this drug. I work with stroke survivors as a volunteer, so I know some of the effects of that awful illness. I'm finding this sight really helpful already. Sandra.

[Splb3317 in reply to Splb3317]

Iron deficiency

Hi everybody, 

I'm not sure how to do a post from scratch (although I did it once), so this is in the form of a reply.  Anyway, I hope it gets onto the site.  My question is about iron deficiency.  I have iron deficiency PV.  I was diagnosed last June and the PV is being well controlled with Aspirin and venesections.  The blood numbers are all good.  The problem is that the venesections are depleting my iron.  As I write this, I am taking antibiotics for my third bout of cellulitis.  My haemo hasn't confirmed a definite link between the two, but sites on the web suggest a connection.  I also have awful restless legs  in the evening, which is also associated with iron deficiency.

My question is - does anybody else have this problem with iron?  Also. would going onto hydroxy help, if it cut down the number of venesections   (I have one about once every six weeks). 

I'm reluctant to disturb the good blood results, but am being brought down by the iron problems.  I apologise for being moany.  I know that in the scheme of things, my problems are minor. Any thoughts from you helpful people would be really appreciated.

Sandra

[meaboutthis in reply to Splb3317]

Hi Sandra,

The iron deficiency is the ultimate purpose of having the venesections; as you reduce your iron stores your body slows down in making RBCs. I have had a hard time physically and sometimes mentally (forgetfulness, fogginess) from being depleted of iron after 8 years of aspirin and phlebotomy as treatment. Hydroxy would bring down the counts without reducing your iron, so the pros and cons of each approach should be carefully weighed with your doctor. Good luck!

[JediReject]

Hi Sandra, , I can understand your concerns here and as many will testify including myself we have taken Hydrox for many years without too much bother providing you keep hydrated. . However I know a guy with PV who is 80 years and he takes Hydrox but has unfortunately developed ulcers on his feet which are stubborn. So you are right to have this concern. I haven't heard of anyone else.

The Hydrox can I think dry your skin which may not become an issue in people with supple skin but given my friends age it is likely that the drug has caused or contributed to his ulceration as he didn't have them prior to taking it.

I'm not telling you this to put you off taking it because I think you would be wise to go with it, maybe though you could use a good moisturiser and be watchful for any changes. . And in your favour you are still relatively young. .

Best wishes whatever you decide. Chris

[mickey64 in reply to JediReject]

Hi Jedi, I have read your posts and you are very inspiring, I am afraid of this drug HU also, you would think I wouldn't be since I was a cancer patient 3 years ago but I did not need any treatment was caught early. I have very very dry skin and I love coffee! which is probably a dehydrator and I hate water makes me sick to my stomach, so hydrate, I'm going to have to learn!

[revfee]

Hello, I'm 56 and have been diagnosed with PV for 27 years and for most of that time have been on hydrea with no real problems. It does seem much more important to reduce the risk of stroke or heart attack. Of course we are all different and some people don't tolerate it as well, but many of us have only had the benefits of this medication. Good luck. Fee

[Sand-Dancer]

Hi

I have PV and have taken Hydrea for almost four years. I take 2 x 500mg for five days the 1 at weekends.

When I was trying to decide if I should go with it my GP said all he could say was that the consequences of a stroke could be terrible and it would be such a shame in someone who is otherwise fit and healthy (I was 58 at the time).

I have had no side effects other than tiredness but I had that with the PV anyway so maybe not the medication?

You are right to think long and hard about it and I wish you the best of luck whatever you decide.

Lesley

[Splb3317]

Thank you all. That's really good advice, and encouraging to know that so many people seem to tolerate this drug with few problems. Many thanks.

Sandra.

[mickey64 in reply to Splb3317]

Hi Sandra I am in the same situation, really afraid to start taking it but really afraid of a stroke! What are these venesections that people say they have? never heard of it and it was never even an option by my DR? Thanks

[Sand-Dancer in reply to mickey64]

Hi Mickey64

Venesections or phlebotomies are done to help lower the red blood cell count in PV. It works by diluting the blood I believe.

It wouldn't help with ET as it wouldn't change the platelets.

Lesley x

[BrendaT]

Hi - I have been taking Hydroxy for 2 years now and so far no side effects at all.

[jane13]

I've been on hydroxy for several years - lost count.

To my mind the risk and consequences of a stroke are far worse than the risks of taking hydroxy.

Also, taking hydroxy slows down yr bone marrow and reduces the risk that you develop scarring or myelofibrosis.

As others have said, just drink lots of water.

What's not to like?

Take the plunge asap!

[stewartengineering]

I am 65, I have had PV for 4 years and no side effects from Hydroxy. When I was first diagnosed I had 6 venesection's over 4 weeks which brings down your count of red cells quickly to start with then managed after that. I usually have a veni every 12 weeks, sometimes 6 weeks in between. The hydroxy suppresses the bone marrow from producing to many red cells, but effects white cell's and platelets as it does not recognise individual cells, it does affect my Haemaglobin levels and I occasionally get tired. I'm ok with the Hydroxy, and as said rather that, than having a stroke. I'm a very active person still playing Tennis 3 times a week go Skiing, partying and still working, so I try not to let it interfere to much with my life. Try not to worry to much, hope all goes well and good luck!

John

[catkinspolymer]

Hi splb , I have had ET/now turning into PV for 20 years and have taken Hydrea for all that time along with baby aspirin and cod liver oil, Some dry skin , one basel cell carcinoma on my forehead but I do get out in the sun alot. It has controlled my condition very well and I am now 70 . so it was good for me. I stay pretty active but do get some fatigue.

However it can cause leg ulcers and digestive problems and not everybody can tolerate it. There is only one way to find out and that is to try it and watch carefully for adverse reactions. As far as i know the bad reactions if they occur should stop if you stop taking it.

Some of the other treatments are just as exciting and some may be worse.

All the best

Town Crier

[Splb3317]

Hi everybody Thank you all so much for your experiences and advice. I feel guilty that I'm taking up so much of this site, but can I ask just one more question? Does Hydra reduce external symptoms like the dreaded itching?

Thanks again.

Sandra

[Hidden in reply to Splb3317]

Hi sandra, I have ET (diagnosed in 2012 aged 51) and take hydroxy. Not had any problems and it has been of benefit to me. I was prescribed it initially because although my platelets not excessively high I had had a portal vein thrombosis and that made me a higher risk patient.

Was very worried initially until I found this site and wealth of info and support it provides. hydroxy had improved the symptoms I had including dreaded itching, headaches and my platelet count now at 331, pretty good!

I try like other have said try to drink plenty of water, use a body lotion/ oil to help dry skin and take it late eve so I sleep through any fatigue it may cause. Do still feel fatigue at times but that not I am sure always down to the ET or hydroxy.

Never feel guilty about asking questions, that what we are all here for. I had lots of quwstions particulary when first diagnosed. Good luck let us all know how you get on Liz x

[jane13 in reply to Splb3317]

No!

[dscotese]

I can't answer about the itching because I never had that symptom. I'm 46 and have been on hydrea for a few months. I noticed that I am able to drink a lot more water than before without getting a headache, which is what happened before I started Hydroxyurea. I like to encourage people to do more research, and asking questions is an excellent way to do that. I don't ask many because I tend to trust my own research more than that of others, but I mention it because you let yourself feel bad for doing something excellent ("I feel guilty that I'm taking up so much of this site, but can I ask just one more question?"). Keep it up!

One thing I've been thinking of lately is this: We make urea all the time, and it differs slightly from hydroxyurea because a little piece of it is OH instead of H, or Basic instead of Acidic. I don't know the strength of the bond between the OH-or-H and the rest of the molecule, so I haven't gotten much further in my thinking about the non-studied, non-mentioned, chemically-detailed, or otherwise not-well-known properties of this substance, but my life (vis a vis risk of stroke) depends on it, so it's pretty important.

In any case, Hydroxy appears to sequester water in our bodies, which explains some of the stuff other people are saying, along with my no-more-headaches discovery. So stay well-hydrated. And if you pay enough attention (I haven't yet) let me know if eating more salt (yes, dangerous for about 15% of the population because of high blood pressure) seems to make hydroxy more effective. I suspect it will because the salt allows the water (containing hydroxy) to stay in our tissues longer.

Are there any chemists out there? I just signed up at physicsforums.com/threads/i... because I wanted to reply to that thread, but I don't yet have sufficient privileges. How about biochemists?

[Splb3317 in reply to dscotese]

Hidscotese,

Thank you for that very informative answer.

Sandra

[lizzziep]

I've been on hydroxy for a couple of years, the side effects mostly faded as my body got used to it, my hair has thinned slightly, I use lots of body moisturiser as my skin is a lot dryer - although that could also be because I am getting older (I'm 62)!

Best Wishes

[JSKly]

I, too, was reluctant to begin Hydroxy urea or carbamide as it is known here in the UK. But it was a good friend to me for about 12 years. It finally wouldn't control my platelets any longer and I was having skin problems so I had to switch. Although I had a leg ulcer in my latter years of taking it, that ulcer was initiated by a trauma, not the drug. The drug did effect my skin and hair. I was in my 60's/70's and my family has dry skin. I am now in a trial for ruxolitinib and like all drugs it seems to have its positives and negatives.

C.

[Splb3317 in reply to JSKly]

Hi JELly,

Thank you for your reply. Thanks to all the great info and support I've had via this site, I'm thinking that I will take the hydrea. I've just had my appointment for my second venesection. So I will see what effect that has and start the Hydrea after Christmas, so as to make sure that any initial problems with it don't spoil the celebrations.

Thank you again for your help. I wish you all the best with your new medication.

Sandra.

[lucieboo]

I take two a day and the Hydrea seems to be controlling my bloods very well currently. I have had occasional mouth ulcers, but they go quickly and I use a very effective over-the-counter remedy, no other side-effects at all: I am 74, PV for nearly 7 years, no venesection necessary for the past 7 months.

[dogsandhorses in reply to lucieboo]

What over the counter remedy do you use for the mouth ulcers? None of my doctors has really offered much of a solution.

[lucieboo in reply to dogsandhorses]

It is called Urgo Filmogel for aphtes ie. mouth ulcers. I also use Pansoral gel which is effective and doesn't sting. I am in France. You will need to look for UK equivalents. Ask a pharmacist. My sister has a special treatment which works for her, it is for cancer patients. It is a mucosal coating agent called Gelclair. It is a bit yucky but she says it works.

[Normski1]

Hi, I was diagnosed with PV, Jak2 Positive 12years ago, aged 52 and was immediately venesected and put on 500mg and 1000mg alternatively daily of hydrea. I have never had any side effects to date that I am aware of. My dosage was recently increased to 1000mg daily to reduce hct levels. Give it a try.

[heathermc]

I start it in January if my platelets have gone up to the magic 1500. I have ET not PV and am 55. I did have the same trepidation I think we all feel but realisation this medication is probably what will bring my platelets down . So apart from fear I am now greeting it as my health protector.. and trying to be more positive.. that won't be easy I hate taking tablets. If it let's me live a near normal life I will be happy. Embrace it think it's the best way to look at this. Also advice from all the lovely people on this site who take time to reply ..very sensible. Good luck with your treatment

[neela2020]

Hi all, good to see a place to share and vent out where other can understand the anxiety. I am recently dignosed MPN PV and on hydra for three months ( 2* 500mg) daily ..hydra reduced RBC count to 4.0, but platelest still slightly elevated. Not sure how it will control both... weekly CBC is a real stress.